mjan

BEAUTIFUL~! What a touching tribute. You seem to appreciate yourself. I bet your children only know you exactly as you are~! And they accept it too. I remember my son said very matter of factly.."You can't run..you never could, right?" So.. your husband accepts that you have these limitations too? That is good. Yet I am sorry for your struggle.. I do know its so hard at times just to get through the day. Sening you..major HUGS and HEALING energy.. Blessings you wonderful mom.. woman..friend..co-member of this club we're all a apart of. WArmly Jan

HUGS to you BREN ~!! I know what its like to only stay in bed..and losing what little energy you have when you try to do something. What I tried was RX Provigil as I could not even keep my head up while trying to work. Walking was exhausting. BUT then I saw this nutritionist. He said I was in such terrible shape I was near organ failure. So he first detoxed any heavy chemicals..then built UP my system with nutrients I was missing or low. It was then that my really BAD fatigue stopped..AND..I got my balance back. Now my fatigue is more in my muscles..esp my legs. I hope you find a doc who will build your system up. Are you taking any nutrients? Vitamins?? Veggies..and protein? Most docs wont even discuss diet and nutrition..its foreign to them. But this nutritionist that I see can TEST for toxins..deficiencies..and build you up for ONLY what you need until you are better again. Hope you feel better..real soon Warmly Jan

Been reading this post with great interest. Its not an easy thing to know what and who to trust completely. In MY experience I have good docs and many who have guessed..and mostly "treated" me with meds. I know why MDs use RX because for most..their training is evaluating..testing and RXing ( and surgery). MDs USE to be trained in wholistic medicine more than hundred years ago. Nature DOES produce many remedies. Just look at the countries that do not have the pharmaceuticals..like the Chinese.. Native Americans.. they have many treatments that work..and for longer than our RX have bee around. Oddly, the pharmaceuticals built our medical colleges.. conduct and sponsor most of the research..and now MDs do not get complete training in using these more natural products nor any training in nutrition. The smart and up to date docs are curious and try and mix up their practice with choices. Yes I am skeptical if ANYONE says the word CURE. Thats not trustworthy for sure. A GOOD alternative medicine provider CANNOT Diagnose but they can recommend. I have had the most amazing changes in my neuro problems with first this realy good chiropractor who uses ART in his practice. ART is Automomic REsponse Testing. He is trained to READ the body's energy/electrical/nerve impulses. He can UNBLOCK where nerves bunch up and block the bodys own electrical energy from the brain through out the nervous system. When our nervous systems are blocked thorugh inflammation.. having nerve endings CUT like from surgeries or injuries..they MESSAGES the electrical energy brings for healing becomes BLOCKED. Anyway..He is amazing..but..he is NOT your typical chiro..he does NOT crunch bones..and he'll tell you if he CANNOT help and recommends MDs that specialize in what he suspects is wrong. Now I have this amazing NUTRITIONIST who also uses the same ART method of testing..but its also called NRT Nurtitional REsponse Testing..the same method..but looking for nutritional imbalances. HE detoxed the chemicals and heavy metals out of my body..like MERCURY found every where now. Next he builds UP the brain/body sytems where I was deficient. YOU ONLY NEED the EXACT foods your brain/body needs ONLY for the time you are deficient!!! YOu dont KEEP taking a product forever like with most RX. He also can measure EXACTLY the amt you need too. Have you EVER heard of an MD prescribe something EXACTLY for the amt YOU need.. for the length of time YOU need it? And have you EVER been told the SOURCE of where your symptoms come from?? These two guys have saved my life. I would not be working and probably be dead if they did not intervene. They both work WITH any MDs I see..they do not have you discontinue your meds..but rather complement the meds and help with side effects of RX. Its WHOLE FOODS organically grown ..ground into capsule or tablet form. All I know is that I FEEL better and some of my problems have subsided or are gone. So much so..that when I have a FLARE..both my neuros tell me to see the nutritionist..They too are amazed at the results.. and all TOGETHER..these guys who practice with alernative treatments WITH my MDs.. I get excellent care. NEVER was I told I was given A CURE. Be careful..but please dont dismiss a good quality practitioner that helps many many people without full knowledge yourself. I am living proof. I need them all !! Jan

HI...just wanted to say hello.. I do not know what your results mean..hopefully someone here will. I too am awaiting my autonomic testing results. But why are you bedridden? And when I heard you say your cardiologist wrote you off. maybe..just maybe..thats a good thing. Do you have a neuro who specializes in Autonomic problems? They seem to be rare...keep your hopes up..write more ok? Warmly Jan

And I thought MY problems were bad. What a great mom to advocate for her. What a lousy vision problem. Has she see a Neuro ophlomalogist?? I hope she gets answers ...and REAL soon..poor dear. How on earth does she do school work? WHen you put her symptoms in google..what diseases show up? She probably has several I bet. I will pray for her..and for you. Please let us know that we care about her ok? Warmly, Jan

Well..its comforting to know that others strugglel with vision/focus problems. Oddly, when I mentioned it to the autonomic neuro he seemed to know..saying its probably my pupils contricting..BUT...what is scary is that I get dizzy..and my focus goes IN and OUT..like being in a tunnel...I feel weak..funny..its THAT mixture that screws up my day..and makes me wonder if I can work...do my paperwork...computer..driving. Jan

HI there Zoe.. I like the way you express yourself. I wish I could answer your very serious questions..but hang in there.. someone will come long and help. Wow.. you had open heart surgery.. what caused that? ANd..I do not understand what you mean when you say.."thought mine were more a combination of extreme spasming from tethered cord...etc. What exactly is going on? Do you see some one now for the seziures?? I especially feel for you as my husband had all kinds but then he did have epilepsy. Just know that you are not alone.. you have us.. we'll help support you for sure. Warmly, Jan

Ok.. I understand where the ER staff is coming from and 66 times is a lot....but....they dont have the FULL story. So you faint? They think. By the by.. the ER doc does not come back unless he has something imp to say.. learned that. Its always the RN who has to Discharge you.. You know you have heard the phrase.."your life flashes before your eyes".. well.. one thought when we pass over to the "other side".. is that you get to review your live.. and what you couldve done differently. These uncaring..unsympathetic kinds will have to face there stuff. ANd.. many ..too many use the ER as a clinic..cuz they have NO insurance or doc. I know..I used to be their casemgr and kept helping them get set up in a clinic..and stop running to the ER. ER is for emergency..well.. YOU came in as one. But yup.. unless you hit your head.. are bleeding try to avoid them. All they do is rule out life and death stuff. I am going to pay mucho for my last ER visit.. as its the end of the year.. new job..and I did not meet my deductible. PlUS the co pay is $100 they collected while I lay in their BED!!! I only went in because 2 nurses I was working with insisted...I had taken all my meds.. even my emergency PRN hypertnsive med and my BP was still climbing WITH a migraine which was all new to me. Now I truly regret it. HOw are you feeling today? Did you hurt yourself when you fainted?? Please stay in touch.. I look for your posts..messages daily. YOu'll like Brain Talk .. and MS World.. they LOVE to be helpful.. know what it feels like..and are much bigger than this forum. Warmly Jan

Yes.. I wanted to ADD that this should NOT keep you from going out.. but..carry something official to help anyone..esp paramedics..ER docs.. know WHO to call..and what to do. Keeps those that are idiiots quiet..and at bay. Soo.. who DO you have that is treating you? And...do you have family they can call.. and THEY also help explain?? How did you get home? Jan

Hello and a warm welcome to you here~!! Hang with us.. we learn along with way.. from one another. To me... still in process of getting ALL my diagnoses...I would rather be with a neuro who specializes in this Autonomic problems. But...thats just me. Be well.. Warmly Jan

OH MY ..my dear friend!!! As far as I know.. you CAN refuse to go the hospital..right? ANd..aren't you under a MDs care at Mayo??? Or recently have been?? Its not you WANT to come the the ER for drugs or something..geesh... Did they do ANYthing for you at the ER??? I know.. I have been there so many times.. its a waste of time and money..but if you are unconscious..you hae little choice. Did they at least give you IV fluids?? I could just KICk the MDs who blame EVERYTHING on anxiety.. MAJORLY BIG COPOUT!! Hang in there sweetie.. or I"ll just have to come down there and KICK their BUTTS!!! Warmly Jan

Just wondering if any of you have LESIONS on the brain. I have many..and some near or on the brainstem. For awhile they thought I had MS..but its been ruled out.. kinda Anyone?? Thanks, Jan

Yes I used to see a neuro ophlamolgist.. had my RX changed 2 times and still no improvement when it happens. Whe it CLEARS..man..its amazing. I also feel like my brain is LOSING o2 or changing.. I can FEEL it it seems. I just worry if I can no longer work..its only been getting worse Thanks for responding..thanks for your help..its nice to have someone else to relate to ya know? Jan

So....do you still drive at night? At all?I Have had my RX for glasses changed 2 times over this.. only to get the new glasses and its not any better.It changes..and YES I remember how I could not see when I got my period (I am PAST that part of life..thank goodness). AFter my period started..my eyesight would CLEAR up...go figure. Thanks for responding

Thanks Mary for you insight. I was a bit panciky about whether I could still work. I have noticed that I have trouble seeing at night too. BUt not sure about taking SALT.. not yet. I have Hypertension..and awaiting for results of my auto testing..with the specialist. BUt what you said makes sense. I am so new to all this..but have had symptoms for years.. it all seems to be getting worse of late. Jan

HI Ernie.. I dont know what you situation truly is.. as I am new here..but NOT new to health problems. What I will hope and pray for is for JUST the right doctor..with the guidance and wisdom to know...to help...to start you healing again. Warmly Jan

HI Suzy.. dont mean to scare you ..but have you ever seen an MS neuro?? That black hole kind of vision problem COULD be optic neuritis. Its worth it to get a work up with an EXPERIENCED MS doc. AGAIN.. I do not want to scare you.. MS is not as bad as some think...they have amazing treatments now. Where do you live? You can contact me privately..ok? But I am looking at more fuzzy..focus related vision problems that come on suddenly..feel SPACEY..and DIZZY when it does. Is is autonomic or more in the migrain field..anyone??? I have both according to my new neuro... Thanks Jan

I am new to this.. so bare with me. My vision.. clarity and focus ..seems to go in an out..sometimes blurry or double vision where letters are seen BELOW the letters not doubled as in twos..making me very dizzy and spacey. It seems to coincide with autonomic symptoms. My new neuro who is the middle of diagnosing me but does think I have an auto nomic disorder..says he thinks my pupils are constricting..affecting my vision. Anyone have this?? Along with weakness..dizziness etc? I am afraid as its been affecting my job.. my typing..and ability to be mentally focused as well. Thanks...Jan

HUGS to you both ~!! What a GREAT mom you are.. of course..doing whatever it takes to help your daughter. Just a little while ago.. I was sitting here worried..wondering if I could work tomorrow.. and the next day.. and the next. But after reading what your daughter is going through.. I feel less sorry for myself.. my HEART goes out to your daughter. Warmly Jan... I will send you a message too...

OK.. I get it now~! But I was using the toolbar on the top of this posting page..to change the size..and learned it just stayed the same.. THANK YOU SO MUCH ~!!! Jan

IS there a way to raise the font size for those like me who cannot see this little font size? I tried..but it turns out the same size no matter what size I choose. Thanks Jan

HUGS to ALL !! So sorry for ANY one here suffering from misunderstanding.. feeling dismissed..misunderstood!! GOSH..I cannot believe parents do this~! ANY way.. either your folks are in DENIAL..as that may mean that something THEY did (or did not do) caused you an illness/disorder. "NOT MY KID" syndrome I call it. OR..they are just choosing to remain ignorant. Certainly self centered rather than LOVING in my opinion. Still..I know we want to be loved..understood..validated. ALL of us NEED that. Guess why forums are needed. But try to remember..you are really NOT alone.. WE're here for you!! Warmly, Jan

Suzy.. and others.. would like to hear of your experiences with these tests.. esp the blowing one. What were the final reports?? Suzy.. even when I had got to 40 I could not sustain. I asked what the purpose was.. what would be helpful. The tech told me that I got to 8 secs finally holding 40ish..but not long enough. He needed 10 seconds sustained to measure..whatever they were measuring LOL. So..if you could NOT do this.. dont worry. THAT in itself should tell the neuro you have problems.. ya think?? LOL Take care.. it will be a nice journey following all of you in this journey of life.. Jan

THANKS for explaining that. After doing some research I think I had read that. Actually getting OFF the testing table.. was the worse. I told him that I get electrical shock like pain that shoots down both my legs. BUT it also locked up my leg muscles majorly=spasticity. I could not move my legs.. and had to be helped to the chair. It was wearing for sure. BUT when I was on the softer but firm table in the warm room where you lay and wait to sweat.. that I could get off of without my trouble. SO.. yes he knows about my shooting pains and muscle problems. With my last neuro..I had EMG on my arms which was postiive but never on my legs which give me more symptoms. Thanks for your response.. good luck with your health issues. Jan